Tag: Advocacy

Carly Findlay is a force! I first encountered her online a few years ago and I’ve been a fan ever since. Then last year when I was doing my blog course, Carly was the invited expert for a student online chat. It was a big fangirl moment for me! I am always blown away by her generosity, insights and can-do attitude. The following words are from Carly’s bio:

“Carly Findlay is a blogger, writer, speaker and appearance activist. She challenges people’s thinking about what it’s like to have a visibly different appearance.

She’s written for many publications including The Guardian, Daily Life, The ABC, Mamamia, Frankie magazine and BlogHer. She’s uses her blog to write about her skin condition, Ichthyosis, as well as promoted causes such as Love Your Sister and Donate Life.

Most recently, Carly was named as one of Australia’s most influential women in the Australian Financial Review and Westpac 100 Women of Influence Awards for 2014. Carly received the 2010 and 2013 Yooralla Media Awards for Best Online Commentary for her body of disability focused writing. She also won the best personal blog category for Kidspot Voices of 2013, and the 2013 BUPA Health Activist award for Positive Life Change. She’s also been a finalist in the Best Australian Blogs competition in 2011, 2012 and 2014″.

May is Ichthyosis Awareness Month and Carly has been working tirelessly to organise the first meet up of Ichthyosis Patients in Australia. You can read more about that in her Ichthyosis Awareness Month stories.

And here she is, talking about how educating doctors promotes compassionate practise. This post first appeared on Carly’s blog, here:

Over the Christmas holidays, I introduced myself as an adult to the dermatologist who gave me a pretty dismal prognosis as a baby. He pretended not to remember me until he told me I always had blocked ears.

I think he was surprised to see me. I told him some of my achievements including how I am now educating dermatologists about my condition (something he needed when he treated me).

I grew up in a small town with one dermatologist. He had very poor bedside manner and made some terrible assumptions of the way my parents looked after me. Needless to say, I was transferred to a paediatrician very quickly!

And like many parents of children with disabilities, mine were told to prepare for the worst. I was diagnosed correctly with Ichthyosis at birth. At first they were told I would be ‘better’ in a few weeks. And then when it was apparent my condition was worsening, they were told that they were not looking after me. At seven months, I was bundled into my parents’ arms – they were told to take me home to prepare for my death. There didn’t seem to be much talk of what I could achieve with the right medical treatments and support.

And so I lived past seven months, reaching milestones in my own time. Then I surpassed seventeen months, seven years, seventeen and twenty seven. I am still here today.

That doctor did not see potential. He saw a diagnosis, a prognosis, possibly an outcast and a life to grieve over. I proved him wrong.Other people with Ichthyosis tell me that doctors didn’t give them a chance either. My friends have said that their parents were told they wouldn’t make it into mainstream school, that they wouldn’t have relationships or children, and that they would be social outcasts. These friends are university educated, in relationships and some have children. And a friend who’s a parent was told that they should be preparing for the worst after their child was born with Ichthyosis – even advised to start preparing for a funeral service. Her little girl is now six.

At Stella Young’s memorial, her close friend Bryce spoke about how the doctors told her parents to start grieving for the child that she wasn’t when she was born. They never grieved, they had not lost anything. Like my parents, they gave her the best possible life, instilling pride through being proud, never doubting her abilities. Bryce said Stella’s parents “didn’t see disaster when people around them could see little else”, and “She was the eldest daughter and sister of a family that would get on with the job of living.” They gave her the resources to succeed, a name that means star, and she outshone those doctors’ expectations

The political models of disability can determine a person’s compassion and empathy towards disability. And so a doctor’s low expectations for a baby born with a disability can set the scene for their attitude through the lifespan of that patient. Perhaps because of the medical model of disability, (where disability is viewed as a problem that belongs to the person with a disability), doctors only see a diagnosis, and not a person. They may not believe a patient with a disability is capable of being educated or empowered about their own healthcare. Yet if doctors studied the social model of disability (that the physical and attitudinal barriers are a a cause of society and can be removed), they’d have greater training and compassion for patients with disabilities.

“While medical school curricula are replete with lectures on “one-in-a-million” diseases, little attention is devoted to teaching future doctors how to care for people with speech disorders or other disabilities.”

“More than half of medical school deans report that their students aren’t competent to treat people with disabilities, and a similar percentage of graduates agree. Accreditation and licensing boards don’t require clinicians to demonstrate knowledge or skills in treating patients with disabilities.

Numerous studies have found people with disabilities receive inferior health care, including less information about prevention and fewer screening tests.

Mistaken assumptions are a big reason. Doctors and nurses have expressed surprise to me when I explained that they have to discuss risks and benefits with patients who are cognitively impaired. Some doctors are also surprised to learn that they need to ask someone who has a physical disability about sexual activity.”

And the New York Times cites how little training doctors had in managing patients with disabilities. Pauline W Chen MD writes of doctors being unaware of how to manoeuvre patients in and out of wheelchairs safely and with dignity, lack of physical access to medical buildings, and the lack of disability training doctors receive. In some cases, doctors didn’t complete the medical exam on the patient because they didn’t have the correct supportive equipment nor a care plan to safely assist them.

It’s this extra care – the physical care and the social care – that is needed to empower patients. Doctors need to move past the textbook and immerse themselves in the disability community to truly learn and empathise with our experiences.

(On a side note, sometimes I go to hospital with a non-skin related ailment. A sore throat, for example. And the doctor is so focused on my skin, sometimes marvelling at the medical miracle sitting before them, that I feel like I am a rare patient coming to life from their textbooks. Really, I just want a doctor’s certificate and a script for antibiotics.)

I went to hospital earlier this year. I was so sore, and a bit miserable. I saw a junior doctor, one I had not seen before. I spent an hour in the consult room, talking to her about Ichthyosis, but also my job, blogging, wedding plans, travel and the Australian Ichthyosis meet. She said I was the first patient she’d met with Ichthyosis and she wanted to learn more than what she’d seen in the textbook. Her supervisor came in to provide further input into my treatment. Again, we talked about life, not just Ichthyosis.And she told this junior doctor how lucky they are to have me as their educator. What a compliment.I am so lucky to feel empowered as a patient at my hospital. These doctors listen to me. They treat me as a person not a diagnosis. They see my potential and are proud of my achievements. Their compassion means I am a human being first.
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So many exciting things have been happening in my life lately. Thanks to my friend Sheryn, I made a connection with an organisation called Be.Accessible who are passionate about creating social change in New Zealand. Their vision is for our country to be wholly accessible, so that anyone of us can just, be. It’s a vision that has a great deal of synergy with my own. My own efforts towards building awareness and understanding in our community here in New Zealand (and with people online everywhere) are all about that. About promoting understanding and acceptance.

I feel very strongly about helping people with ‘invisible’ illness and or disabilities, chronic illness and rare conditions that people find hard to comprehend. I write not just for me, not just for people with Dysautonomia, but for anyone who suffers the torment of not being understood, of finding judgement where they should find kindness. I use my words so that others might find something they can share with their loved ones. A way to explain what they haven’t been able to explain. Sometimes it is hard to find the words.

Doing that. Using my words, has brought me to a surprising place in my life. My health continues to deteriorate, but my heart and mind are filled with bigger and better thoughts than ever before. I saw my Granny today and she asked “Are you well?” and I could honestly reply to her “All is well with my soul!” I have a purpose and a direction that I never even knew was in my future. I thought everything was so lost to me. I thought all of those things were out the window. Gone. But here I am, about to embark on something new. The joy bubbles up from inside, how surprising and wonderful life can be!

Last night I attended an event here in Auckland, down on the waterfront. It was the graduation for this years participants in the Be.Leadership programme. The programme aims to mentor people into positions of greater social leadership by providing a year long programme of discussions and learning with some of New Zealand’s great leaders. Among other great initiatives! The program cost is $17,000 and this is fully funded for selected participants. I have applied (squee!) and I am waiting to hear what happens next… so watch this space!

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Last month I began writing for the parenting column of a popular Dysautonomia Newsletter in the States. And I met my editor, Ellen, online. Sometimes when you meet someone, just as it is in person, you just click right away. It was like that with Ellen. She understands me and we have had lots of wonderful email conversations, back and forth from one part of the world to another. She is a wonderful encouragement to me. Recently she sent me this song. It stopped me in my tracks. What a voice. What lyrics! Thanks Ellen, this song is my new anthem, it so perfectly expresses why I continue to find things that I CAN do. Life is calling out my name.
Here is Beth Hart singing “Life is Calling”

…and, the lyrics…
Sunday morning, the world’s still sleeping
And the rain keeps falling like angels weeping
And I, I feel the tears on my skin
They’re trying to tell me something
I listen

Blues and yellows tap on my window
And I let the night go with all my shadows
And I, I feel the sun on my skin
It’s trying to tell me something
I listen

Life is calling, life is calling
Life is calling out my name
Make it matter, say it louder
Stay alive another day
Life is calling out my name

Perfect houses with good intentions
Where the happy families hide their broken dishes
And I, I hear the scars on my skin
They’re trying to tell me something so
I listen

Life is calling, life is calling
Life is calling out my name
Make it matter say it louder
Stay alive another day
Life is calling out my name

It’s the wind over the ocean
It’s the secrets in the sand
It’s all trying to tell me something
So I’m listening

Life is calling, life is calling
Life is calling out my name
Make it matter just say it louder
Stay alive another day
Life is calling, life is calling
Life is calling out my name

This morning I was chatting online with another Dysautonomia patient. She has Neurocardiogenic Syncope, one of the types of Dysautonomia, where I have Pandysautonomia, another type. We are both in the same city; we are from similar socio-economic backgrounds and both fall into the same District Health Board zone. We have seen the same doctors. But the treatment we have both received has been different.

On seeing the same specialist, about the same issue (recurrent fainting), she was told she was ‘faking it’. I was given a room of my own in the public cardiac ward and fitted with a pacemaker to stop the faints from occurring. I don’t know the ins and outs of her medical history, so this is not an entirely objective comparison. But I know that her new cardiologist takes her condition very seriously indeed. So seriously he admitted her to the cardiac ward before and after recent surgery so that he could monitor and treat the various issues anaesthetic drugs and surgery would create with her autonomic nervous system. She is no ‘faker’. Another friend with Dysautonomia, in another part of Auckland, has been abandoned by her District Health Board altogether. She struggles, largely bedridden, without medical care of any kind.

Many patients with our diagnosis endure consultations with Specialists who cast aspersions on our authenticity. I can only conclude, that ‘fakers’ must occur frequently in doctors offices. Otherwise, I can’t understand why it would be such a ready conclusion to be leapt upon? Perhaps, when the answers aren’t easy to find, some doctors find the alternative of ‘the faker’ patient more palatable than saying “I don’t know”? It must be difficult as a doctor, as someone who relies not just on their years of experience but also on their mental accuity, to consider that they don’t know what is wrong. Is dealing with not knowing, ever part of a doctors basic training? Do they cover what to do when they are faced with a patient who doesn’t fit within their current paradigm? Perhaps medical school is where a doctor learns to make the judgement of “faker” in the first place? Doctors, Specialists, I would love your perspective on this if you are reading.

I remember sitting in a doctors office once. I was very ill. I’d been fainting for most of my post-adolescent life. He explained that were I a young woman, he might think to ask me about my relationship with my mother. “Some young women who don’t get on with their mothers have a tendency to hysteria and unexplained ‘fainting’…” he mused. I waited for him to smile and tell me that thinking like that used to occur in medical circles oh, around the time of Austen. But he wan’t joking. He continued “you seem a reasonable person…” and proceeded to discuss the treatment he had planned for my actual symptoms and the signs visible in my tests.

I think I was a lucky one. My profession lent me some respect. My manner seemed ‘reasonable’. My age at diagnosis was clearly an advantage (lucky me, I’d been sick for longer than some of those poor ‘young women’). My test results were dramatic. The fact my husband works in the Health Sector and was a familiar face possibly also lent some significance to my case. But should it need to? Should younger patients have the onus placed on them to prove that they are in fact emotionally stable? Shouldn’t objective tests be recognised and patients treated impartially? Should doctors not err on the side of “I don’t know” rather that “you are a faker”?! Is it so painful to not know?

We rely on doctors to be scientific; objective. But doctors are human. The sum of their personal and professional experiences contributes to their professional values. They come to their praxis from their own unique place on the values continuum. They have ideas already entrenched, in relation to some conditions. Sometimes these ideas are there because of experiences with previous patients. I did once see a doctor who referred to people with my diagnosis (then, it was POTS), as “you people”. Sadly, fainting has for centuries been considered a ‘female failing’ a sign of a ‘weak constitution’.

Michelle Roger, an Australian Dysautonomia Advocate and Health Activist, recently wrote an excellent article about when being a woman is an impediment to medical care. I urge you to read it. It’s an issue that needs to be discussed more in community forums. I and other patients with rarely diagnosed diseases or chronic invisible illness welcome any opportunity to discuss these issues with medical practitioners. It all starts with the sharing of articles like Michelle’s. With engaging in discourse about why some doctor’s offices provide this shaming and difficult experience for many genuine, female patients. It’s not on.

It’s a damn shame. Being laid on the wrong shoulders… and it’s got to change.